139. Evidence submitted by Nora Warner
(PPI 19)
I should like the following points to be added
to the weight of evidence to be presented to the Health Committee.
Although I am a member of Eastern and Coastal Kent PPI Forum and
lead for Canterbury and Coastal Locality Group, these are my own
views and do not necessarily reflect those organisations' attitudes.
1. The purpose of patient and public involvement
is to redress the balance. The NHS does not belong to the Department
of Health nor to the staff. Ultimately it exists to serve the
public who, through taxes, are its paymasters. It was high time
they had a voice in decision making.
2. We bring a different perspective to plans
and problems and are able to cite our own experiences as patients,
carers or simply recorders of other members of the public's views.
Forum members devote many hours a week unpaid to PPI work. The
only direct reward we get is to have our travelling expenses reimbursed.
I don't charge for phone calls or postage. I use my own stationery
and IT equipment. We cover our own eating out expenses in order
to attend meetings set at times that suit paid members of staff.
We bring expertise acquired in other walks of life and we don't
complain if we aren't even offered a glass of water, let alone
a cup of coffee and a biscuit. I reckon that's good value.
3. Who really knows why reform was felt
to be necessary? Did Forums ask too many awkward questions? Our
total independence meant we couldn't be cowed or bullied. There
have been claims that we are too white, too middle class, too
old .. . who else has the time, the income and the experience
to devote chunks of their free time to wading through lengthy
and verbose reports; sitting through and making sense of countless
meetings; instigating inspections; calling PCTs or Trusts to account;
carrying out surveys; suggesting solutions to problems ... We
keep hearing about hard to reach groups who need to be heard.
Any one thought that they may not want to be reached and have
nothing to say?
4. I believe that there should be a PPI
presence at every decision making level. To remind those who talk
of beds that they are occupied by thinking, feeling human beings,
who shouldn't be moved about like chess pieces. To say and keep
on saying: "But what will this actually mean for the patients?"
5. LINks ( who thought up that excruciating
name?) should build on the relationships forums have already established
both with the public and their local NHS contacts. The big advantage
will be bringing together social and health care under one "watchdog".
6. They should be totally free from local
authority interference. Funding should come directly from DoH.
7. No empire building.
8. Actually finding people willing to serve
is likely to be a problem. One of the strengths of the original
forum set up was that people felt they could influence what went
on in their own patch. There is understandable reluctance to drive—in
one's own time—two or more hours to the other side of a
local authority area, especially at night and in the winter. It
takes a long time to understand how the NHS conducts itself—just
ask the various Ministers who have struggled to get on top of
their briefs. A pity if that hard won knowledge is thrown away.
9. It is vital that the forums' statutory
powers are retained by LINks. Surely we believe in openness and
our inspections produce helpful suggestions as well as criticism.
10. The Healthcare Commission is on record
as saying it wants a closer relationship with PPI, irrespective
of whatever label it is currently wearing. Forums may be checking
up on apparently small matters: distance to disabled parking bays;
door width and ramp position; surgery opening times; telephone
call charges; location of toilets; signage; menu choices and help
with feeding ... but ironing out such apparently minor inconveniences
can make a great difference to the patient experience.
11. There was some resentment that forums
apparently were seen as unpaid research assistants to OSCs. A
better balanced partnership should be the aim, one that has some
clout when it is needed.
12. Our forum has always been welcomed at
PCT Board meetings. LINk representatives ought to have the right
to offer their views and to vote when appropriate.
13. Our remit was not to take up individual
complaints. Instead we became involved if a situation developed
that affected a group of people. For instance, the closure of
a clinic without warning or moving the out of hours access point
without consultation. This seemed a sensible approach so that
we did not overlap with the PALS service or patient user groups.
I hope these comments are useful
Nora Warner
3 January 2007
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